Thank you so much for everything y’all have done for me and my family to get to my $1 million goal. On New Year’s Eve, I was a little bit worried that I wouldn’t make it to my goal, but all of sudden, when I checked my website, I was getting hundreds of donations and messages from people that I barely even knew. I was the one that got to tell my sister the news and it was the proudest moment of my life. Not only did you help Christiane but hundreds of other kids who have Batten disease will benefit from your generosity too.

Garland Benson was joined by family and friends as well as members of the community on Tuesday, Dec 18 for a fundraising event at Honest Mary’s. The Austin-based restaurant, which celebrates healthy eating with its menu of grain-based bowls, donated 100% of its evening profits to Garland’s Be A Hero campaign. It was a record breaking Tuesday for Honest Mary’s, and together we raised $385!

Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.

Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.

“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”

The Be Project is Beyond Batten Disease Foundation’s campaign to raise $6 million to fund the treatment and prepare for clinical trials for juvenile Batten disease. Thank you for contributing over $5.7 million. DONATE NOW to help us meet our goal by December 31.

A team led by researchers at Baylor College of Medicine has uncovered an unexpected mechanism that can explain a form of Batten disease called neuronal ceroid lipofuscinosis 8. The findings published in the journal Nature Cell Biology provide potential new targets for future therapeutic interventions for this rare and incurable disease.

Learn about Garland Benson’s BE a Hero campaign to raise a million dollars to fund a treatment for his sister who has juvenile Batten disease. He is so close to reaching his goal with only $124,000 to go and a few weeks of fundraising remaining! Support him and his sister with a donation today – Donate Now.